lay member lynch syndrome rdps

Transcript

1 What we ’ re looking for and what ’ s involved What is a patient or carer specialist committee member ? A patient or carer specialist committee member is a member of one of our committees who has personal experience of using health or care services specifically in the healthcare area that the committee is looking at . The phrase can also someone from a community affected by t he mean unpaid carer. committee's topic area o r an advocate or Specialist committee members sit on the Committee for the duration of their topic. What will the committee be doing? and NICE T he committee will look at the evidence that is available, develop guidance on t esting strategies for Lynch syndrome in people with endometrial . cancer The NICE diagnostics assessment programme is going to assess the clinical and effectiveness of molecular testing strategies for Lynch syndrome in people with - cost ecommendations on their use in the NHS. endometrial cancer in order to make r Lynch syndrome (also known as hereditary non polyposis colorectal cancer - [HNPCC]) is an inherited genetic condition. Lynch syndrome is associated with an increased risk of several cancers, including endometrial (a ca ncer that arises from the endometrium, the lining of the uterus or womb) and colorectal cancer. P or call [email protected] If you need this document in another format, please email 0161 870 3020

2 NICE diagnostic guidance 27 recommends using immunohistochemistry or - based strategies (MSI) to test for Lynch syndrome in people microsatellite instability gnosed with colorectal cancer. dia Currently, testing for Lynch syndrome in people diagnosed with endometrial cancer is not done, or is only done in some people with an identified risk factor for the condition; for example, age at diagnosis or a family histor y of Lynch syndrome - related cancers. Endometrial cancer can be the first cancer to occur in people with Lynch syndrome and the best way of testing may be different to tests used in colorectal cancer. Identifying the syndrome at the point of diagnosis coul d prevent further cancers in people with Lynch syndrome (such as colorectal cancer), through increased surveillance and strategies aimed at reducing risk. People can be monitored for other cancers and their close relatives can also be offered testing for L ynch syndrome. The NICE iagnostics a ssessment p rogramme will assess how test ing st rategies d (and any similar tests) work and whether they are cost - effective in or der to make . in the NHS recommendations on its use For more information about our committe committee es and what they do, visit the of our website. area What knowledge and experience will I need? endometrial W e’re looking for people with an understanding of Lynch s yn drome and people using d service cancer and the issues important to patients , families an , their s . their carers As a lay member, you will have this understanding: • through personal experience you have of treatment and care provided for you by the NHS unpaid used relevant health carer of someone who has • as a relative or services as an advocate, volunteer, or officer of a relevant charity or organisation. • You will also have: P or call [email protected] If you need this document in another format, please email 0161 870 3020

3 - • ood communi cation and tea m g working skills • the ability to listen and take part in construct ive debate, while being respect ful of other people’s views • knowledge of the experiences and needs of lots of people which gives you the ability to champion perspectives on this topic. a range of different Wh o sits on the committee ? develop lay our guidance. As well as NICE committee s professional , committees are also made up of members members . This in cludes people who work in health or social care, as well as a range of other roles. Lay members and patient and carer specialist committee members have the same status and carry out the same functions as other committee members. What does the role involve? • attending committee meetings (see time commitment below for more information) and taking part in discussions to shape the guidance reading committee papers • • commenting on documents between meetings • keeping the committee’s work confidential. What am I expected to do? Make sure the views, experiences and • interests of patients or people who use health and social care services are taken into account by the committee. • Identify areas of concern to people using NHS, public health or social care services. raft Review topic information and the d • guidance from a patient, service user, carer or community perspective. For instance, does the information address issues important to people affected by the guidance? Does the guidance take their views into account? P or call [email protected] If you need this document in another format, please email 0161 870 3020

4 • Make sure the guidance considers pe ople from different backgrounds. How much time need to give and where? will I It’s important that you are available for the committee’s meetings. Meetings for this committee will take place as • follows: Scoping workshop: 2019 4 July - (AM only) - Assessment Subgroup meeting: 17 July 2019 Committee meeting 1: 27 Febru ary 2020 - - Committee meeting 2: 30 April 2020 ise stated. otherw Committee meetings will last for less • 1 day un The meetings will take place in central Manchester . • What’s in it for me? • You will be helping to make national and local health and social care services work better for patients, people who use services, carers or the public. • Previous lay members have said they found their confidence i mproved, as well as developing other skills like public speaking and critical thinking. Being a member of a NICE committee shows you are an expert by • experience. It also shows you are able to work in a team, as an equal ide healthcare and other professionals . contributor to the committee alongs What support will I get? A named member of the public involvement team will be available throughout your time working with us, to offer help and support. You will be offered training and guidance to make sure you chats feel confident on the committee, as well as regular named contact. with your P or call [email protected] If you need this document in another format, please email 0161 870 3020

5 If you have any special requirements, for example access or travel needs, we can discuss this with you and make adjustments where needed. What happen s after I apply? The public involvement team passes on applications to g this committee. Your application is then the team runnin shortlisted against the required skills and abilities set out in this document. If you are shortlisted you will be contacted for a phone interview to talk about the positio n, your application and what is involved before a formal invitation is offered to sit on the c ommittee. They will take place on the phone and will last no more than 20 minutes. More information committee, read For more information about becoming a member on this our additional information document on the advert web page. This gives more information about: • payment and expenses , including how this could affect any benefits you receive how we can help you to apply if you have a disability • how we monitor • equality and diversity in NICE’s work • what we expect from our committee members • what might prevent you from sitting on a NICE committee how we will use the personal information you give us • what you can do if you’re not happy with our recruitment process • P or call [email protected] If you need this document in another format, please email 0161 870 3020

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